Josh's Memorial Service

My family and I would really like to thank everyone who came to Josh's memorial service. It was so nice to see how many people really cared for my brother! Thank you all for your prayers, kind words, meals, flowers, cards, etc. If you didn't get to sign the guest book, please let me know and we can arrange a time for you to sign it.

I would like to apologize to my grandmother! I'm so sorry I forgot to put you in the obituary! It should've said survived by his grandmother Deloris Parrish of Sierra Vista and for some reason I forgot to write that! Jeff and I wrote the obituary together and we've never had to write one before so we did the best we could. Jeff would also like to apologize to everyone who donated time to Josh, Rosie, and Mom. He wanted to mention you also and forgot! We're so sorry!

I would like to let everyone know that after the service, Dennis came up to me and told me that a few people told him that they accepted Christ as their savior when he gave the invitation during the service. If you were one of those people I would love to hear from you so I can put that in the book that I'm making. You can email me at memoriesofjosh@hotmail.com When he told me this it made me happy to know that Josh and his faith had made such an impact on you! I consider that part of the "silver lining"!

Memories for Josh

Over the last several days, I've really enjoyed hearing other people's stories and thoughts about my brother. It's really nice to know how highly everybody thought of him! I created an email account- memoriesofjosh@hotmail.com I would like to ask that anybody who has comments, stories, fond memories, pics., etc and would like to share them with us to please email them to me. When things calm down I would like to take all of that and make books for his boys to have. We have lots of stories to tell them about their Daddy, but I thought it would be nice for them to hear them from other people as well.

Funeral Services for Josh

The memorial service for Josh is going to be held on Friday, Nov. 7th at 1:30pm. The service will be held at the Main Post Chapel on Ft. Huachuca.

If you do not have a sticker to get on post you will need to stop and get a visitor pass. Passes can be obtained at the visitor's center at the Main Gate; please be sure you bring your Drivers License, Registration, and proof of insurance. All adults in the vehicle will be asked to present picture ID at the gate.


Google Map to Post Chapel:
http://maps.google.com/maps?f=d&saddr=&daddr=31.554933,-110.355735&hl=en&geocode=&mra=dme&mrcr=0&mrsp=1&sz=16&sll=31.555692,-110.35672&sspn=0.007533,0.013518&ie=UTF8&t=h&z=16

Josh isn't in pain anymore. He went to be with the Lord shortly after12 this afternoon. He was surrounded by his family and friends.

Thank you all for your prayers and support! Please continue to pray for the whole family!

I will post an update as soon as the all the arrangements are made.

I'm sorry but I just can't write anymore today!

Sorry it's taken so long to update, it's been really crazy and I was having a hard time finding the right words. I'm not very good at this!

Josh is home from the hospital. The Dr.'s are saying that right now the most important thing they can do is manage his pain. They sent him home with a pain pump and hospice is coming to the house to take care of that and anything else he needs. His blood count is still really low and his calcium levels are high. In 2 weeks they will re-assess what's going on and Josh can decide if he wants to do the next round of chemo or not. Mom has taken off from work to be with him and Dad is still home with a bad back! Please pray that God will give Josh a miracle! Please pray that we can keep him comfortable! Pleas pray for God to give our whole family strength!

In the hospital again

Just wanted to let everyone know that Josh was admitted into the hospital last night. He had a blood clot in his colostomy and they told him to come up and get checked out. His blood count was low so they admitted him and gave him a blood transfusion. When Mom called this morning he told her they were most likely going to keep him in but he didn't say anything else. Mom is on her way up Tuscon now, so I will update this again when we find out anything more! Please keep him and our family in your prayers!

New Chemo

Just wanted to let everyone know that Josh started a new chemo last Thursday. He went to the Cancer Center in Tucson on Thurs. and Friday last week for two treatments and then this week on Mon. Tues, and today. After this I think he waits 3 weeks and does it over again. He's been really tired! Please pray that this treatment will work and that he will get some relief from the pain!

He's out of the hospital!

Mom brought Josh home from the hospital this evening. One order said he needed to stay on a liquid diet but then they told him he could eat whatever he could tolerate! Who knows! I don't know a lot of the details but one of the new things is that he will go back to Tucson on Thursday for a new type of chemo. Thankfully he gets to do it at the Cancer Center and doesn't have to go to the hospital. As of right now he will stop the treatments in CA. Sorry this is so short and doesn't have much info. I will update it when I have more. Thank you for all your prayers while he was in the hospital. Please continue to pray that he will be able to eat, that he will get some relief from the pain, and that they will find something that will work to shrink the tumors!

The scan has been read by the Dr. now and there is no blockage! Thank goodness! They gave him a patch for the pain and so far it's working. He's been able to eat a little bit and has had "output". They're going to keep him overnight to make sure everything is working! Please continue to pray!

Mom and Dad went to Tucson this morning to be with Josh.

Mom just called and said that they're waiting for the official reading of the scan, but the surgical team just came by and said that they don't see a blockage. They think it might be constipation from all the pain meds. They're trying to get him a patch for pain relief. Right now they're not letting him eat or drink anything just in case. Josh is hoping that while he's there they will go ahead and scope him just to make sure and that may help push stuff out. They are also talking about starting him on another type of intense chemo, but they can't really decide on that until they make sure that there isn't a blockage.

I will post more as soon as I hear anything so check back occasionally. Please continue to pray that everything will be ok.

Below is what I copied from Josh's website. He wrote this after his treatment last week. He went to Tucson today for a Dr.'s appt. and got admitted to the hospital this evening. They're afraid he's got a bowel obstruction/blockage. They were supposed to do a CAT Scan and and MRI but for some reason it didn't get done tonight. I guess he's supposed to get it tomorrow, but for now they're keeping him in the hospital. Please pray that if it is a blockage that it will be easy for them to fix it w/o surgery! Please pray for some pain relief and that he'll get to come home very soon! He hates being in the hospital! Also please pray that they'll know which treatment to do make things better and keep the tumors from growing.

They went ahead and gave me another treatment. I have to meet with my Tucson doc to see if we're going to continue with this or not. I'm thinking that I'll stop this treatment and do another high dose chemo regimen like the one I was on before. I think it's another 5 days in the hospital for each treatment and again every 3 weeks. If I can get through 1-2 of those treatments, it may get me to a better state and then I can go back to the ET743 and maintain it until we can find something else. At this point, I think we really just have to find something to reduce the mass to get me comfortable again. I'm getting worse and on top of the pain and not sleeping, it's getting really hard to eat. I've lost some more weight and can't really eat many solid foods. I've been eating a lot of soups and pudding. I'm dying for some Taco Bell Chalupas, but last time I did that I was up ALL night in pain.

Below is the latest update from Josh's trip to CA this last week.

They screwed up again so I spent 2 extra days out there. I don't understand how a doctors office can operate like they do. My scan was Monday and my treatment was supposed to be on Wednesday. I did the math and it was cheaper for me to stay in Santa Monica between the scan and treatment rather than fly in and out each day. The scan on Monday went smoothly and afterwards I went into the Sarcoma Center to get some blood work done so I could get my next round of treatment on Wednesday. They finished what they needed to do, but failed to tell me they were done and let me just sit there for about an hour before asking me why I was still sitting there. It's one big open room and they had passed by me I don't know how many times. Was it so hard to say "that's all for today"? I clarified that I didn't need to do anything else until Wednesday and that I could come in first thing when they opened to the start treatment. They told me that was it and that they would get me in and out Wednesday morning so I could get home to my family.

So Tuesday I went down to the 3rd St. Promenade to catch a movie (couldn't think of anything else to do). I had a bit of time to kill so I walked around and found a cool toy store that had LOTS of Star Wars toys. They had a few really cool vintage toys, but money is tight so I had to restrain myself. I went in first thing Wednesday morning (first one there), got my weight, and sat down in one of the chairs. After about 15 minutes they came around to check my vitals and accessed my port-a-cath and drew some blood. After another 20 minutes or so I heard them ask if it was OK to start me. I heard the head nurse say no and that I need to talk to the doctor. I asked, across the room, if there was a problem with my PET scan from Monday and she said "yes it wasn't good". So I figured that there had been growth since my first treatment and that they were not going to let me continue. The doctor came in and walked past me several times. I asked one of the nurses what was going on and she went to check. I heard the head nurse tell her that they wanted me to continue with the treatment and to go ahead and start me. After some time had passed (they still hadn't started me), the head nurse came over to me and said that the drug company screwed up and that my medicine wasn't there. She said I needed to stay another day and that my drugs would be there Thursday morning around 10:30. I'm a grown man but I'll admit that it took all of my strength to keep myself from crying. I re-emphasized how expensive these trips are and said that they need to make sure my drugs are there before I fly out there. They should have verified that my drugs were there on Tuesday knowing that I would be there Wednesday for treatment.

I was there for about another 2 hours before we finally got everything settled. The drug company agreed to pay for the additional night at the hotel, the additional day of the rental car, and the cost of changing my flight. The only thing I don't get back is the extra day away from my family. What else could I do, so I got out of there and went back to my hotel. Luckily I was able to get my room back and then I spent the next hour changing my flight and rental car reservations.

I went in Thursday morning a little early to make sure that they got me started on time so I could make my flight. Everything went pretty smoothly. I was hoping to get done in time to make an earlier flight (since they paid to change the ticket, my ticket became a normal ticket so it could be changed again without a fee). They finished up and said I was good to go. I still had time to make the earlier flight. I made a quick trip to the bathroom and when I came out I heard them say "oh, there he is". AARGHH! .... NOW WHAT? They told me that I need to stick around because they needed to do another EKG. I asked why and they said that when they examined me earlier I had an irregular heartbeat and to be safe they needed to do it. Both of the examine rooms had patients in them so I had to wait until a room was free. My chances of getting on the earlier flight were diminishing. They finally got me in and did the EKG and I got out of there as quickly as I could. I made it to the gate of the earlier flight with 20 minutes to spare. Luckily the flight was pretty empty so I got a good window seat.

Hopefully the next round will go smoothly. I'll be doing day trips every other week from now on. I'll be sure to leave enough time between my flights in event of delays.

Thanks again for all the prayers, please keep on praying.

-Josh

Below is what I copied from Josh's 4wheeling site. Sorry it's taken so long to update this. Like normal things are pretty busy around here.

After some hassles from the California Doc's office, I finally got everything taken care of to start the new treatment. To keep this short, lets just say I had to make a few trips out there to get all the paperwork, tests, and scans done. I finally got my first treatment of the new drug last week.

I've been having the side pains again and I'm back on the pain killers (3 times a day). Today I met with my Tucson doc for my monthly exam. I showed him a new lump I found on the right side of my ribs near the lump I had found a month, or so, ago. This new lump felt harder like it was bone. He examined the area and said that there are actually 2 new lumps and he said it wasn't bone, but felt like they are attached to the ribs. He feels that they are tumors based on how they physically felt. Best thing we can do is hope that this new treatment will be effective in either getting rid of them, or keep them from growing. They are getting a little painful when I lay on my right side. Every once in a while it feels like needle pokes.

Next week I'm out there for 3 days because my scan is on Monday and my treatment is on Wednesday. It was more expensive for me to fly home and come back, so I'm just going to stay the extra day. Maybe I'll actually get out of the hotel room and drive down the street to the beach. I think I'm about a mile from the beach each time I go out there and I still haven't been down there. Either that or maybe I'll find one of those go-kart tracks and get a few laps in.

Then I'll be going out for day trips every other week after that. I'll have PET scans here and there that will require extra trips, but those should be more spread out. Maybe I should just move to California. I think I could rent a loft apartment for about what I pay for my mortgage here.

He left for CA Monday morning for the next round of treatments. Please pray that things will go better this time and that he'll have a safe trip. When he went out the first time he was told that he had done everything they needed him to do and that he could go home. After he flew home they told him they still needed him to do a few other things so his next trip out lasted longer than it was supposed to.

Having to go to CA so often now is becoming physically and financially draining. He's thinking about selling his "rock crawler" (technically I think it's called an FJ40 Land Cruiser) to help pay for his trips to CA. Please pray that everything will work out. Please pray that God will give him the strength and the money he needs to make these trips. If anyone knows someone in the Santa Monica area that might be willing to let Josh stay with them or help with transportation, please let use know. Thank you again for all your prayers and support! Please continue to pray that these treatments will work and that he will get some relief from the pain.

Josh and Ethan at Disneyland


Last week Josh went to Tucson for a Dr.'s appt. They were able to go in with a needle and remove 2 1/4 liters of fluid from his abdomen. This alleviated some of his pain! He was even able to go into work for a little while last week!

He also had a CAT scan done that day. I guess the scan showed that everything was pretty much the same. At least the tumors haven't grown, especially since he hasn't had a treatment in a long time!

He decided to start the new treatment in CA. He will fly out tomorrow to fill out the paperwork and then he will have a PET scan on Thursday and then fly home after that. Below are some things I cut and pasted from his 4-Wheeling site.

Aug. 13th- I met with the TX doctor yesterday and he won't operate either. He at least took the time to explain to me why an operation is not possible at this time. Basically the 2 main arteries in my pelvis are encapsulated by the tumors so removing the tumors is not possible. If only one was encapsulated then there would be a chance, but that's not the case.

He felt that tumors are showing a lot of necrosis and said that cells will swell as they die so that may be why some of the tumors appear bigger and I have more pressure. Now I'm torn between continuing on my current treatment to see if things improve (since there is more necrosis, maybe I just need to give it more time to start shrinking), or switching to the new treatment hoping for faster results but not knowing what it will bring me. I have to make a decision in the next day or so and I just don't know what to do.

Aug. 15th-I met with my doc in Tucson yesterday. I was all prepared to discuss the 2 treatments (my current ET743, and the new one MKC1106-PP) and make a decision.

My doctor does not want me to wait for the OTHER treatment (R1507 {an IGF-1R inhibitor} combined with Everolimus {an mTor inhibitor}). He doesn't feel like I have time to wait for it (even doing one of the other treatments while I wait). He said if it was him, he would forget ET743, and MKC1106-PP and do the other IGF1R inhibitor that I can start in California right now. This is not R1507 but it is the same type of drug, just a different manufacturer.

So we have a monkey wrench. A third option that I wasn't really considering until yesterday. Both R1507 and Everolimus have shown great results as mono-therapies so combining them theoretically should be even better. There is no guarantee, however, that this new trial will start in the next month or two, or ever for that matter. Many of these trials get canned before they ever even start. If the IGF-1R treatment alone works, then I'm that much better off. This is the treatment that I've wanted to start for the past few months, the only reason I didn't start it for my last treatment is because I heard of the upcoming one. The doctor says we have good data on the IGF-1R working by itself, so why wait?

I've had MANY people praying that I make the right decision, and yesterday (when it was still just between the 2 drugs) I had no idea which way to go. I now feel strongly that my new 3rd option (IGF-1R alone) is the way to go. I'm going to call the doctor in California in the next few minutes to discuss this 3rd option, so if there is no problems with me starting it, that's the way I'm going.

Aug. 19th- Thank God, I got some relief today. They were able to drain 2 1/4 liters of fluid from my abdomen today. It wasn't really painful. I felt a little stick when they poked me for the lidicain, then a pinch when they pushed through the peritoneal lining. They had to do it 3 times before they got it to drain. First time the catheter kinked and the 2nd time it got clogged. 3rd time was the charm. My abdomen looks much better, I can actually see where my belly button should be. I have a bit of a valley across my abdomen when I lay down. Much less pressure, hopefully tomorrow the pain (that I've been having in my side) will go away. It already feels a little better tonight. I've been soaking through the bandages though. It looks like the fluid from the adema has found a route out (through the needle hole). This fluid is different than what they pulled out of my abdomen. This fluid is in the outer tissue. I guess the more it drains, the better it is.

After the paracentisis I had my CT scan. I should hear the results in the next day or two. This is the next step to begin the new treatment.

Thanks again for all the prayers. I can't tell you how much I appreciate it.

Josh and Aiden at Disneyland.

Josh got back from TX this morning. The surgeon he went to see told him he wouldn't do the surgery either. He told him that it looks like some of the tumors have become "jelly like" and that they might be able to do paracentesis and withdraw some of it to give him some comfort.

He's going to Tucson tomorrow to see his Dr. They're going to discuss what treatment he should go with. Please pray specifically for God to lead him to the right treatment.

Info about the new trial drugs

Here is the email Josh just sent me about the trial in Tucson that he's going to start.

He flies out to Texas to see the surgeon on Monday. He has a friend named Chris (who also has DSRCT) that will pick him up and take him to the appt. He will also be staying with him while he's in TX. The surgeon that he's going to see is the same one who did Chris' surgery.

The new trial that I'm going to start is MKC1106-PP. It's a phase I trial that has already completed the "low dose" portion of the trial. I will be in the "high dose" trial. This drug targets 2 antigens found on some tumors PRAME and PSMA.

"PRAME is found in lung cancer, breast cancer, ovarian cancer, renal cancer (kidney), pancreatic cancer, and colorectal cancer (colon and rectum) cells. PSMA was originally found in prostate cancer cells and later found also in the blood vessels which supply lung cancer, breast cancer, ovarian cancer, renal cancer, pancreatic cancer, colorectal cancer, and melanoma (skin cancer)."

Basically I'll get an IV shot and 2 shots directly into the lymph nodes in my groin (guided by sonogram) 2 times a week, every other week. I'll get the plasmid dose on days 1, 4, 15 and 18, and the peptides on days 29 and 32.

Possible side effects seem minimal: Headache, fatigue, joint pain, and soreness at the injection site. This drug does not attack all fast growing cells, just the targeted cells. This should keep my blood counts up so hopefully I'll start feeling better.

GOOD NEWS!

I'm running out of recent pics. so here are some older pics. of Josh & his family.

Here's an email I just got from Josh! We are all so excited for him! This is what we've been waiting for! Thank the Lord! Please let this be the treatment that does it and thankfully he won't have to travel too far!

My Tucson doctor called me yesterday. I told him about the problems I've had over the last 2 days and that I haven't had any output from my colostomy all day. He said that if I didn't have any output from my colostomy by morning that I needed to go up to Tucson (this morning I've had some output, so I'm not blocked). He told me that the results of the tests on my tumors were in and that they had the 2 receptors needed to qualify for the trial in Tucson. I told him that I had my appointment next week with the surgeon so depending on that, I could start the new trial as early as the following week (the 18th) if he won't operate, or after I recover if he will do the surgery. I have to be 28 days without other treatment to start the trial in Tucson, so the week after next will be past that point. So either way, I'm getting a new treatment to try until the other trial opens in San Antonio. I talked to the head nurse at the clinic in Santa Monica and she said I could stop my current treatment and try something else, then come back if the new treatment doesn't work as well. So I can always go back.

Aunt Sue, Josh, Rosie, Uncle Bill, Ethan and Aiden

Here's the latest from Josh!

No pilots had picked up my flight through Angel Flights yet, so I canceled and now I have my flight scheduled for next week to Austin. I found direct flights using ExpressJet and for the round trip it's just over $200. Everywhere else had stops in other cities and they were about $330 each way. There is another DSRCT patient that lives in the Austin area (he's the one that gave me this doctors contact info, also had his surgery by him). He's offered his guest room and offered to pick me up from the airport, take me to my appointment and take me back to the airport. So this trip isn't going to be bad at all. Looks like God is opening the doors. I don't think it could have worked out better. Now we'll just have to see what the surgeon says.

Josh and Ethan at Disneyland!


Josh sent me another update this morning. Below is what he wrote! Please pray that God will lead him to make the right decisions!

The Texas surgeons office called my Tucson Oncologist and setup a surgical appointment for the 12th. Now the problem is that I'm supposed to start my next round of treatment in California that day. My thoughts right now are if Angel Flights hasn't had any pilots pickup my flights for that trip, then I may cancel and go ahead to Texas for the appointment. If Angel Flights has a pilot lined up, then I won't cancel. If the doctor agrees to operate, then not doing this next treatment will allow me to have the surgery sooner since I won't have to wait for my counts to recover. I'd kind of like to have the doctor look at my CT scans before I fly out there in case there is something obvious that would make him not want to operate, but at the same time, I'd like to see him face to face so he can see the swelling and I can explain to him in my own words how badly I want the surgery. Another wrench has been thrown into my decision on surgery though. My wife told me the other day that she doesn't want me to do the surgery. She doesn't think it's the right choice but hasn't said anything since I was so for it. I still feel deep down that this is the right thing to pursue.

As far as my new drugs go. I stopped taking the Lyrica to see if that would help with the drowsiness. I still have random bouts of drowsiness and some nausea/vomiting, but the pain is still under control, so I'll continue on without the Lyrica. I started taking the Ritalin again today so we'll see if that helps. I also started taking Milk of Magnesia twice a day. That has really got my colostomy moving. With taking just the Senokot-S I was changing my bag 2 times a day if I was lucky. Since I started the Milk of Magnesia, I seem to change it about 5 times a day. I'm having much less cramping. However my appetite has gone down. I'm still eating OK, but I don't feel like eating as much as I was.

Hi everyone! Below is the latest on Josh. Please pray that God is leading him to the decisions he's making! Please pray that he will get some relief from the pain and the swelling.


I met with my Tucson doctor yesterday. He really doesn't want me to have surgery. He thinks it's a bad idea. He is, however, going to send a referral to a surgeon in Texas at my request. The doctor in Texas did a surgery on another DSRCT patient, that I've been talking to, that no one else would do. His colleagues called him crazy but he said he'd do the surgery again in a heart beat. We'll see what he says after seeing my records.

Tuscon doc says I look way better than he expected me to look considering everything. So I guess that's encouraging. He says there is really nothing they can do for the swelling.

I told him that I was using Perkoset every 2 hours for the pain, but I've read that it's not good for the liver. The past couple of days I switched back to the Dielodin which last for about 4-5 hours before I have to take it again. The biggest problem with the Dielodin is that it takes about 1.5 hours to kick in, so I'm in pain unless I overlap my dosage. The Dieloding also makes me puke occasionally and makes me itch as I come down. He prescribed me a slow release Oxycontin that should last me 12 hours, so I'll take that twice a day and I should stay above the pain threshold. He also said that this dosage should take care of the pain without making me feel drugged, so maybe I'll be of some use now. I just started it last night and I took it again this morning so we'll see how I feel on it. So far no pain, and just a little druggy feeling. Mostly I think it's making me drowsy. I'm also taking Lyrica, which is also a long lasting pain killer, twice a day. The combo seems to be good so far.

The clinical trial that my Tucson doc wants me to start (in Tucson) is still on hold pending the result of the tests they're running on my tumor samples. The tests should take another week. I told him about the one starting in the next 2 months that's the R1507/Everolimus and he thinks that would be a good trial to get into, however he kinda hinted that I shouldn't wait for it and I should start the other IGF-1R inhibitor that Santa Monica doc wanted me to start. I still feel like the the 2 drug combo would be worth waiting for so in the mean time I'm going to continue my current treatment (ET743).

I did the math and I'm actually spending between $446 and $500 per trip for just the flight, hotel stay, and cab fare. The difference is whether I book my flight early enough to get the "Get away" fare. I called Angel Flights (a volunteer group that arranges flights for medical patients using private pilots/planes) and got setup with them. I pushed my treatments back a week to make sure my counts would be good enough for treatment so we can avoid changes with the flights. Since these are volunteer pilots (using there planes, fuel, and time) it's best to have a firm date/time for travel. Many of these pilots take off from work to be able to fly patients. This will make my treatments every 4 weeks instead of every 3. What they do now is put my travel dates into a system and pilots can pick a flight that they are willing to do. So now I wait until a pilot or several pilots pick my request. If this works out, it will save us $246-$300 dollars each trip. Plus they'll be able to fly me into Santa Monica, so cab fare will be cheaper too.

I think that's it for now.